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The Beginning of My Journey to a Rare Disease Diagnosis

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Sometime during the summer of 2010, I started feeling lightheaded when I would stand up. I told my doctor that when I stood up, I felt like all the blood in my body rushed to my head and I heard a “whooshing” in my ears and felt like I was going to pass out.

I was getting migraines for the first time in my life and had extreme fatigue. My doctor gave me a prescription for an MRI along with a referral to a neurologist.

I scheduled my MRI for an evening so I wouldn’t miss work. I was working full-time as an attorney and my three children were all under the age of 5 years old.

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